A Collaborative Approach to Improving Care Outcomes for Residents in Assisted Living.

Purpose: Assisted Living (AL) residents are embedded in "care convoys" comprised of a dynamic network of formal and informal care partners. Using the convoys of care model-a multi-level framework connecting care convoy properties to resident outcomes-we examined healthcare management and communication between convoy members. We recommend strategies to engage primary care in supporting collaboration, communication, and consensus-building for older adults and their convoys. Methods: Data were collected from the longitudinal study, Convoys of Care: Developing Collaborative Care Partnerships in AL. Fifty residents and their care convoy members (N = 169) were followed in eight AL homes in Georgia over 2 years. Original data were analyzed using Grounded Theory Methods of qualitative data, including formal and informal interviewing, participant observation, and record review. Results: The convoys of care model provide an innovative perspective that will assist providers in supporting AL residents and their care partners to achieve better care outcomes. Findings demonstrate the utility of understanding the structure and function of social resources and implications for improving healthcare outcomes. Conclusion: This research informs the work of physicians and mid-level providers with patients in AL by providing strategies to uncover specific social determinants of health. Recommendations for use in patient encounters are enumerated.

Resident and Caregiver Dyads Talk About Death and Dying in Assisted Living: A Typology of Communication Behaviors.

BACKGROUND: In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL). OBJECTIVE: To understand communication behaviors used by AL residents and their informal caregivers (i.e., family members or friends) related to death and dying, and address communication needs or opportunities applicable to EOL care in AL. DESIGN: A thematic analysis of in-depth interviews and fieldnotes from a subsample of data from a 5-year NIA-funded study. SETTING/SUBJECTS: Participants included 15 resident-caregiver dyads from three diverse AL communities in Atlanta, Georgia in the U.S. MEASUREMENTS: Interview transcripts were coded for communication behavior. Concordances and discordances within dyads were examined. RESULTS: We identified a typology of four dyadic communication behaviors: Talking (i.e., both partners were talking with each other about death), Blocking (i.e., one partner wanted to talk about death but the other did not), Avoiding (i.e., each partner perceived that the other did not want to communicate about death), and Unable (i.e., dyads could not communicate about death because of interpersonal barriers). CONCLUSIONS: Older residents in AL often want to talk about death but are blocked from doing so by an informal caregiver. Caregivers and AL residents may benefit from training in death communication. Recommendations for improving advance care planning and promoting better EOL communication includes timing these conversations before the opportunity is lost.

"Just Join Them": Improv and Dementia Care.

Improvisational (improv) theatre skill development holds promise for improving the dementia capability of care partners. In this report, we present analysis of data from an ongoing study on meaningful engagement and quality of life among assisted living (AL) residents with dementia. Using ethnographic methods, we collected data from persons with dementia (n = 59) and their care partners (n = 165) in six diverse AL communities each studied for one year. Building cumulatively on past work and existing literature, we demonstrate the potential benefits of training care partners to use improv skills. We discuss implications, including the need for intervention research.

Bioethics in Gerontology: Developing a Typology of Ethical Issues in Assisted Living.

Assisted living (AL) simultaneously is home to older adults who cannot live independently and a place where people work and visit and, therefore, where value conflicts are apt to arise. In this report we present the "Typology of Ethical Issues in Assisted Living" with emphasis on its development. The typology derives from a synthesis of frameworks used in acute care spaces adapted and applied to data collected as part of an ethnographic study involving AL residents with dementia. Our work advances knowledge and has implications for future research and practice.

Turning It Over to God: African American Assisted Living Residents' End-of-Life Preferences and Advance Care Planning.

OBJECTIVES: Assisted living (AL), a popular long-term care setting for older Americans, increasingly is a site for end-of-life care. Although most residents prefer AL to be their final home, relatively little is known about end-of-life preferences and advance care planning, especially among African American residents. Our research addresses this knowledge gap. METHODS: Informed by grounded theory, we present an analysis of qualitative data collected over 2 years in a 100-bed AL community catering to African American residents. Data consisted of field notes from participant observation conducted during 310 site visits and 818 observation hours, in-depth interviews with 25 residents, and a review of their AL records. RESULTS: Residents varied in their end-of-life preferences and advance care planning, but united in the belief that God was in control. We identified "Turning it over to God" as an explanatory framework for understanding how this group negotiated end-of-life preferences and advance care planning. Individual-level resident factors (e.g., age, pain, and function) and factors reflecting broader cultural and societal influences, including health literacy and care experiences, were influential. DISCUSSION: Contradictions arose from turning it over to God, including those between care preferences, planning, and anticipated or actual end-of-life outcomes.

Understanding Capacity and Optimizing Meaningful Engagement among Persons Living with Dementia.

Meaningful engagement is a key dimension of quality of life among persons living with dementia, yet little is known about how to best to promote it. Guided by grounded theory methods, we present analysis of data collected over a 1-year period in four diverse assisted living (AL) communities as part of the study, "Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia." Our aims are to: (a) learn how meaningful engagement is negotiated among AL residents with dementia and their care partners; and (b) identify how to create these positive encounters. Researchers followed 33 residents and 100 care partners (formal and informal) and used participant observation, resident record review, and semi-structured interviews. Data analysis identified "engagement capacity" as central to the negotiation of meaningful engagement. We conclude that understanding and optimizing the engagement capacities of residents, care partners, care convoys, and settings, are essential to creating and enhancing meaningful engagement among persons living with dementia.

"You gotta have your cry": Administrator and direct care worker experiences of death in assisted living.

Assisted living (AL) is increasingly a site of end-of-life care and a long-term care location where growing numbers of people are aging in place and dying. Despite these trends, limited research focuses on how death and grief impact the work environment in AL. This grounded theory analysis examined qualitative data collected from 27 administrators and 38 direct care workers (DCWs) in 7 diverse settings. As assisted living administrators and DCWs experienced resident death, they engaged in a dynamic and individualized process of "managing the normalization of death," which refers to the balance of self-identity and workplace identity. The process of reconciling these opposing contexts in AL involved several individual- and community-level conditions. Administrators and DCWs would benefit from additional resources and training around death. Increasing collaboration with hospice and clarifying policies about death communication would better prepare the workforce to acknowledge the end of life in assisted living.

"I'm not terribly lonely": Advancing the understanding of intimacy among older adults.

BACKGROUND AND OBJECTIVES: Intimacy, a social relationship component, continues to be essential in later life, including for older adults in long-term care such as assisted living. Yet, no previous study has conceptualized how individuals experience intimacy holistically (i.e., broadly defined) and within the context of later life, health decline, and long-term care. The purpose of this analysis was to provide an in-depth understanding of intimacy in the lives of older adults in assisted living. RESEARCH DESIGN AND METHODS: Using grounded theory methods, we analyzed data from the "Convoys of Care" (Kemp, PI: R01AG044368) longitudinal, qualitative research project. Data consisted of 2224 h of participant observation and interviews with 28 assisted living residents (aged 58-96), and their care partners (n = 114) followed over two years from four diverse assisted living communities. RESULTS: Residents' experience with intimacy was a process involving four dimensions: emotional, intellectual, spiritual, and physical. Intimacy occurred in platonic or romantic forms and was dynamic over time alongside residents' intimacy needs. Residents engaged in an ongoing process requiring that they manage their needs while negotiating intimacy opportunities and constraints. DISCUSSION AND IMPLICATIONS: Our findings expand the current conceptualization of intimacy in later life, specifically in the context of long-term care. Findings indicate the need for an approach to long-term care that addresses individuals' intimacy needs and preferences.

"It's Going to be Different for Everyone": Negotiating Quality of Life and Care Priorities Within Care Convoys.

Objective: The overall goal of this analysis was to learn about residents' quality of life and quality of care in assisted living over time and from multiple viewpoints within support networks. Method: This grounded theory analysis examined qualitative data collected from 50 residents and 169 of their care network members followed over two consecutive 2-year periods in 8 diverse settings. Results: Quality involved a dynamic process of "negotiating priorities," which refers to working out what is most important for residents' quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because quality is personal, subjective, dynamic, and situational. Discussion: Communication and collaboration among formal and informal care partners are vital to residents' ability to age in place with a high quality of life and quality care.

Assisted Living Residents With Dementia: Being Out in the World and Negotiating Connections.

BACKGROUND AND OBJECTIVES: Persons living with dementia, including long-term care residents, and their care partners emphasize the importance of meaningful engagement and stress the need for activity and opportunities to go outdoors or offsite. Yet, little is known about getting out in this population. Here, our objectives are to (a) identify residents' opportunities for, and experiences with, getting out; (b) understand the significance of getting out; and (c) explain influential factors. RESEARCH DESIGN AND METHODS: Guided by grounded theory methods, we analyzed qualitative data collected over a 1-year period in 4 diverse assisted living communities. We followed 33 residents with dementia and their care partners. Data include detailed fieldnotes capturing 1,560 observation hours, 114 interviews with residents (where possible), assisted living staff, family members, and other visitors, and record review. RESULTS: We identified the centrality of "being out in the world and negotiating connections," which characterizes residents' experiences with the outside world as a process of "working out" engagement with nature, others, and the community. Being out in the world was consequential to well-being and quality of life. Most residents got out at least occasionally; some lacked opportunities. Among residents who got out, most benefitted from ensuing connections. Yet, not all experiences were positive. Being out in the world varied over time and by individual-, care convoy-, assisted living community-, and neighborhood-level factors. DISCUSSION AND IMPLICATIONS: We discuss the implications of our findings for research and practice surrounding meaningful engagement among persons with dementia, including during crises such as the pandemic.

The Ethics in Long-Term Care Model: Everyday Ethics and the Unseen Moral Landscape of Assisted Living.

Assisted living (AL) communities are long-term care settings where people live, work, and visit, and where social relationships and care, including end-of-life care, are negotiated. Assisted living is fraught with uncertainty and conflict about values, especially given residents' cognitive and physical frailty. These value-laden issues have implications for both resident and care partners' experiences. Yet, almost no research has examined ethics in this complex care environment. In this article, we draw on and synthesize existing theory, research, and practice knowledge to offer a conceptual model and discuss case examples that highlight everyday ethical issues in AL. We conceptualize the moral decision-making process and hence the moral landscape of AL, as influenced by a myriad of multi-level factors that shape interpersonal encounters and decision-making involving residents and their care partners, which ultimately shape individuals' actions and experiences in the setting. We conclude by discussing implications for research, policy, and practice.

Meaningful Engagement Among Assisted Living Residents With Dementia: Successful Approaches.

Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents' record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.

Limiting and Promoting Resident Self-Care in Assisted Living.

OBJECTIVES: Assisted living (AL) residents often manage multiple chronic conditions, functional and/or cognitive decline along with their individual needs and preferences for a full life. Although residents participate in their own care, little is known about their self-care activities and how to support them. This analysis focuses on residents' self-care and theorizing the dynamic, socially embedded process of negotiating self-care. METHODS: We analyze data from a grounded theory study informed by the Convoys of Care model. Participants included 50 focal residents and 169 paid and unpaid convoy members in eight AL homes; each resident convoy was followed up for 2 years. Data collection included participant observation, interviews, and resident record review. RESULTS: To the extent possible, most AL residents were involved in self-care related to activities of daily living, health promotion, and social, emotional, and mental well-being. Residents and care partners engaged in a dynamic process of limiting and promoting self-care activities. Multiple factors influenced self-care, including residents' past self-care behaviors, caregiver fear and availability, and the availability of services and supports. DISCUSSION: Strategies for promoting self-care must involve residents and care partners and include convoy education in collaborative goal-setting, prioritizing care that supports the goals, and putting resources in place to support goal achievement.

#MoreThanAVisitor: Families as "Essential" Care Partners During COVID-19.

The public health response to the current Coronavirus pandemic in long-term care communities, including assisted living, encompasses prohibiting visitors. This ban, which includes family members, has been criticized for being unfair, unhealthy, and unsafe. Against this backdrop, I examine the roles family play in residents' daily lives and care routines. I argue that classifying family as "visitors" rather than essential care partners overlooks their critical contributions and stems from taken-for-granted assumption about gender, families, and care work, and I demonstrate why families are more than visitors. Policies that ban family visits also reflect a narrow understanding of health that focuses on mitigating infection risk, but neglects overall health and well-being. This policy further stems from a limited comprehension of care relations. Research shows that banning family visits has negative consequences for residents, but also families themselves, and direct care workers. I argue that identifying ways to better understand and support family involvement is essential and demonstrate the utility of the Convoys of Care model for guiding the reconceptualization of family in long-term care research, policy, and practice during and beyond the pandemic.

Barriers and Facilitators to Exercise Participation Among Frail Older African American Assisted Living Residents.

Despite the well-known health benefits of physical activity, older adults are more sedentary than any other age group. This issue is particularly true for assisted living (AL) residents, which also represents an important and often overlooked aspect of palliative care. Here, we analyze ethnographic and interview data from a longitudinal study aimed at identifying best practices for palliative care in one African American AL community. The aim was to identify the factors that facilitate and constrain resident participation in instructor-led group exercise. Thematic analysis identified several main themes including the quality and location of the exercise program, AL staffing limitations, residents' health and function, values about exercise, and residents' interest in recreation and social engagement. We identified facilitators and barriers that shaped residents' opportunity, desire, and commitment related to attending group exercise. Findings have implications for interventions aimed at increasing resident participation in group exercise, leading to multiple health benefits.

Complexity of care: Stressors and strengths among low-income mother-daughter dyads.

Research on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population.

A Profile of the Assisted Living Direct Care Workforce in the United States.

Background and Objectives: The purpose of this article was to develop a profile of direct care workers (DCWs) in assisted living (AL). Research Design and Methods: We used data from 2014 American Community Survey (ACS) to identify the demographic and employment characteristics of AL DCWs. We collected state training requirements for AL DCWs from the administrative rules of state agencies and interviews with state officials. Results: AL DCWs were more likely than other DCWs to be younger, male, White, English speaking, U.S.-born, never married, and to have attended college. Two Affordable Care Act (ACA)-designated training topics (self-care and the role of the personal care aide) were not required in any state. Discussion and Implications: AL has tapped a unique pool of workers (i.e., younger, male as well as female, and with some college education) but needs to address its workforce needs via training, improvements to overall job quality, and the development of career opportunities.

Communicative Competence: Responding to Residents' Health Changes in Assisted Living.

BACKGROUND AND OBJECTIVES: Frail and disabled individuals, including assisted living (AL) residents, are embedded in care convoys composed of dynamic networks of formal and informal care partners. Yet, little is known about how care convoys operate over time, especially when health changes occur. Thus, our aim was to provide an in-depth understanding of care convoy communication during times of residents' health changes in AL. RESEARCH DESIGN AND METHODS: Data for this analysis come from a Grounded Theory study that involved 50 residents and their care convoy members (n = 169) from 8 diverse AL communities followed over 2 years. Researchers conducted formal and informal interviewing, participant observation, and record review. RESULTS: We identified "communicative competence" as an explanatory framework in reference to a resident's or care partner's ability, knowledge, and action pertaining to communication and health change. Individual and collective competencies were consequential to timely and appropriate care. Communication involved: identifying; assessing significance; informing, consulting or collaborating with others; and responding to the change. Variability in communication process and properties (e.g., pace and timing; sequencing, timing, content, and mode of communication) depended on multiple factors, including the nature of the change and resident, informal and formal caregiver, convoy, AL community, and regulatory influences. DISCUSSION AND IMPLICATIONS: Formal and informal care partners need support to establish, enhance, and maintain communicative competence in response to health changes. Findings reinforce the need for timely communication, effective systems, and well-documented accessible health care directives and have implications that are applicable to AL and other care settings.

Individualization and the Health Care Mosaic in Assisted Living.

BACKGROUND AND OBJECTIVES: Assisted living (AL) is a popular residential long-term care option for frail older adults in the United States. Most residents have multiple comorbidities and considerable health care needs, but little is known about their health care arrangements, particularly over time. Our goal is to understand how health care is managed and experienced in AL by residents and their care network members. RESEARCH DESIGN AND METHODS: This grounded theory analysis focuses on the delivery of health care in AL. Qualitative data were gathered from 28 residents and 114 of their care network members followed over a 2-year period in 4 diverse settings as part of the larger study, "Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living." RESULTS: Findings show that health care in AL involves routine, acute, rehabilitative, and end-of-life care, is provided by residents, formal and informal caregivers, and occurs on- and off-site. Our conceptual model derived from grounded theory analysis, "individualizing health care," reflects the variability found in care arrangements over time and the multiple, multilevel factors we identified related to residents and caregivers (e.g., age, health), care networks (e.g., size, composition), residences (e.g., ownership), and community and regulatory contexts. This variability leads to individualization and a mosaic of health care among AL residents and communities. DISCUSSION AND IMPLICATIONS: Our consideration of health care and emphasis on care networks draw attention to the importance of communication and need for collaboration within care networks as key avenues for improving care for this and other frail populations.

Contours of "here": Phenomenology of space for assisted living residents approaching end of life.

Informed by theory from environmental gerontology, this study investigates how assisted living residents who are approaching end of life navigate and experience space. Since its development, environmental gerontology has moved beyond the concept of person-environment fit to encompass aspects of place attachment and place integration, processes by which inhabited impersonal space becomes a place of individual personal meaning and this person-place relationship evolves with changing needs. Our study is a secondary data analysis of in-depth interviews completed with the first 15 residents (mean age 88, range 65-103; 8 white and 7 black) recruited from four diverse assisted living communities in metropolitan Atlanta. Using interpretative phenomenological analysis, we identify five overarching themes within and across assisted living communities and their subthemes. Findings show that participants experience a neutral theme of shrinking space, negative themes of confinement and vulnerability, and positive themes of safety and intimacy. Results dovetail with other phenomenologically based environmental gerontology research from community-dwelling populations that indicate behavioral changes to accommodate aging and health decline. Findings have implications for interventions to improve place integration in AL and enhance residents' quality of life at end of life, including developing strategies to promote small meaningful journeys within context of shrinking life space.